Hi!
This weather the UK is having right now?! I hope you are all staying cool and hydrated. And remember Lupus warriors, get your factor 50 and sunhat on! Last thing you want, is this lovely sunshine sending you into a flare.
We are currently getting ourselves ready for our big Pyrenees trip in the campervan next week. Honestly, I cannot wait! The weather at the moment is looking gorgeous. A little bit cooler than here in the UK, but sunny days, which hopefully means clear summit tops.
17 Days In The Mountains
We are there for 17 days, hoping to explore the French and Spanish side, and tick off a new country, Andorra. We are packing the E-bikes and hoping to do a mixture of walking and cycling. We plan on catching cable cars/chair lifts to get us up high, and do lots of fun walks to lakes and waterfalls. If the weather permits, we hope to head up the famous Col du Tourmalet. Driving, not cycling up as they did on the Tour du France!
A Sauna
Since I’ve last made an appearance on here, we’ve been incredibly busy with house renovations. We’ve been busy designing a new kitchen, which we hope to fit after our trip. We’ve been working on our home gym, trying to get to the bottom where the leaks have been coming from over the winter, when we had the crazy amount of rain.
The most exciting project that’s been going on, we turned one of our spare bedrooms into a dressing room/space to relax, and bought an infra-red sauna.
Yup, you heard that right! We have a full spectrum, two seater, infra-red sauna, and I looove it!
Hoping It Will Help My Circulation
The main reason for buying an infra-red sauna, to try and improve my circulation.
But after 4 weeks using my sauna, sadly, there’s been no improvement to my fingers or toes. But I’m not giving up on hope!
I’m currently waiting for a bed to have my Iloprost infusions. So maybe after my blood vessesls get widen back up by infusions, the sauna will help to keep them open? I can only hope!
Being Consistant With My Pilates
The sauna currently may not be helping my circulation, but don’t worry, it hasn’t been a waste of money! I absolutely love it! It warms me up when I’m cold, and it’s helped me massively with muscle aches, especially DOMS after exercise.
As the sauna has been helping with my muscle recovery, and my health has been good with the wolf, I’ve been able to be a lot more consistent with my Pilate workouts. Honestly, this makes so happy! Espesially after the few years I’ve had and not having a long enough stetch of good health, and loosing a fair bit of muscles, it feels like a real treat. Something I will not take for granted. Something I’m making the most of, as you never know what the months ahead have in store.
Hopefully, the treatment I’m on long continues, my blood work stays stable, and the wolf stays happy. Because honestly, I love feeling well. I love having energy to do the things I love. I mean, who doesn’t right?! Living with a chronic illness is a journey! And not always a fun one!
For any of you who are reading this and struggling day to day, please don’t give up on hope. Better and stronger days will hopefully come. Also, don’t be afraid to ask for a change in treatment if you think the one you’re on is not working. Please don’t just expect it.
A Comment That Has Stuck With Me
Something I always remember my nurse saying to me when I first started on my biological, Belimumab…
‘If your treatment works, you can end up feeling really well, and almost forget you’re living with the chronic illness.’
I guess taking your daily pills and stabbing needles in yourself multiple times a week reminds you. But joking aside, I feel like I’m almost at that point in my journey. A point in my journey I’ve been dreaming about, ever since I started my Belimumab.
I started my Belimumab 2 years ago on the 1st June. It’s been a long waiting to game to get here, but I’m here.
Also note, I did taper my Prednisolone last summer, which probably delayed me getting to this point. And I also had my Methotrexate increased by 10mg, which helped too. It helped to replace the loss of steroids and helped to work along the side of my Belimumab.
Something else I remember my nurse saying to me was how Belimumab and Methotrexate work so well combined as a treatment.
I feel like this combination has become my miracle treatment!
A Date For My Iloprost
Hopefully, after our trip, I will get a date for my Iloprost infusions. My hands are currently very sore, along with my toes. I’ve been rubbing my sores in Vaseline all day long to keep them moist, which seems to ease the pain a little. Not only that, I’ve been wearing my white, cotton gloves at night to keep my hands warm, which I’m hoping is helping the healing.
Even though everything else with the wolf seems to be good, my raynuards seems to be one horrible battle, one I never feel like I’m winning!
What’s so frustrating, is that my Raynaud’s is secondary to my Lupus; I was hoping that once my lupus is more under control, so would my Raynaud’s be. However, right now, it isn’t the case, and monthly Iloprost infusions are still in question moving forward.
Raynaud’s is horrible! The pain, the swelling, the consistency of turning purple every time they’re slightly cold or stressed. Bending my fingers hurts, accidentally knocking my hand hurts, grabbing things hurts, unscrewing things hurts, and then, when they are cold, the pain is a whole new level.
My left hand currently:
That’s all from me this time.
Until next time,
Goodbye for now
Emma
xox
If you would like to be notified each week when my blog goes live, straight to your inbox, please subscribe here:
(don’t forget to check your junkbox for the confirmation e-mail!)
My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
